Last reply 1 year ago
Does 2+2=5 ???

I am new to this …. My other history is in my profile bit..so I’ll not repeat it all .. but..
Oh my…my brain is working overtime…I think I need to calm down to a riot.

I am sitting in Limbo land, reflecting on the conversation with the MS consultant earlier in the week….and as usual thinking damn ‘I forgot to say this …or that’

So I will tell you instead. I am thinking about autoimmune issues..

I have had viral meningitis three times, each time is was put down to a rhinovirus..ie a cold virus that has triggered off the meningitis. The consultants decided that it was my immune system that was attacking my brain. I didn’t get normal cold symptoms…it just went straight from that ‘just before a cold’ feeling to severe agonising headache extreme temperature and all the meningitis symptoms..(except the rash). In the last twenty years I can honestly say I have had no more than a dozen fully recognisable colds!! ….I just get a headache which I have learned to recognise as an early symptom and then I just lie down for a full day..and wait for it to pass.

I have recently, 2 yrs ago, been diagnosed with a clotting disorder…my platelets don’t function properly…they are there…just not behaving themselves..there was a suggestion that this may be immune related but the experts don’t really know. I often get nose bleeds, and bruise very very easily… (this doesn’t bode well considering that I now keep fall down and battering into doors and furniture :-0 )

My daughter, who is now 27, had ITP (Idiopathic thrombocytopenic Purpura) when she was 18 mths old..this is an autoimmune issue where her body attacked and destroyed her platelets, causing severe risk of bleeding etc. we were told his was caused by a cold virus…Her immune system has always over reacted to viruses she gets extreme temperature responses to infections..giving her childhood febrile convulsions.. Then when she was 17 she has the first two HPV vaccines and then ended up having a bizarre immune response. She developed Reactive Arthritis, and needed to have lots of fluid removed from her joints…it was so severe she couldn’t even move her hands to her face to take a drink. When she was in hospital this reaction also affected her heart – she was in tachycardia. and her CRP elevated to 240..indication a massive inflammatory response.
Unfortunately that then led on to FSGS (Focal segmental Glomerulosclerosis) about nine months later…again immune system was attacking the body, this time it was her kidneys..she now only has 25% kidney function..

Is there a pattern here? or am I making more of an issue than I need to?

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stumbler
1 year ago

@pikilily , one thing that I’ve learnt to accept is that our bodies are complicated pieces of “machinery” and our Doctors are not magicians.

However, they are getting better as the boundaries of medical science are pushed further and further.

Given your and your family’s history, it may be that a Doctor needed to step back and look at the whole picture. Then, they may have started “joining the dots” earlier, to understand the full picture.

MS has always been a difficult condition to diagnose, but, even this is improving. Hopefully, the present investigations will provide some more answers for you.


pikilily
1 year ago

@stumbler…thank you.. This is the first step of a long journey..
I have my backpack, some sturdy boots, and a notepad…………..and my music to help me along the way.

Luckily for me, my daughter is a psychologist who is currently working with MSers, so I have some good, well informed support available – whatever the outcome.

Having said that – to be able to link up with other people who understand and are going through the same issues, is going to be a lifeline.

‘Pollyanna’ will be my guiding light.
Emma T


cameron
1 year ago

Suggestion: contact the neuro’s secretary (may take a little time: in my experience they often work part/time and all you get are voicemails) and ask/state that you would like to forward to the neuro further important clinical details in relation to your recent appointment; that you are not expecting feedback on this but you feel that s/he needs to be aware of these facts and you’d be grateful if she’d pass them on to the neurologist so that they can be entered onto your clinical history. Then, once you have the forwarding address, just make a list of the facts with relevant dates and send it. After that, put it out of your mind. I did this with details of an MRI that was done by a different hospital for a different reason: sent it all with covering letter and got a reply thanking me saying that the information had been noted.


potter
1 year ago

My husband work mate daughter got a HPV shot also and started having bizarre reactions also. The doctors told them it couldn’t be the shots so they got the second one which made it worse. She was having MS and Parkinson symptoms so severe that the doctors didn’t think she had long to live. She manage to survive but has seizures and has a therapy dog to warn her. Potter


pikilily
1 year ago

Oh lordy @potter…there have been a few stories like this.
The Hospital actually yellow carded my daughters reaction…ie this gets reported as an official reaction.
My daughter was warned off having the third shot to complete the course..and has to be very careful about ALL vaccines now
ET x


pikilily
1 year ago

@cameron – thanks – I have done just that. The consultants secretary couldn’t have been more helpful..she was delightful and gave me lots of advice about how to stay in the loop.
Good Call.
Emma x

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